CrimsonVoid - Coming off of Lamotragine

[Crimsonvoid]

I was on around 300mg of lamotragine for about 4 years. I decided that I wanted to come off of it this year and tapered off of it rapidly with a psychiatrist's supervision. I finished tapering off it around April 30th 2014. I have been having withdrawal symptoms since.

As far as I can tell I'm only experiencing mental issues. I'm having trouble with short term memory, I've been having a lot of trouble with concentration and thinking in general and I have been having some anxiety issues.

The symptoms seem to come and go and I think they are lessening, but I'm getting to the point that I'm worried that they'll never go away. I know that one option is to start taking the meds again and then tapering off of them slower, but I can handle things the way they are right now as long as I know the symptoms will go away in a couple more weeks or so.

[Petunia]

Welcome Crimsonvoid,

 

Thank you for posting an introduction, I'm sorry you are having some uncomfortable symptoms after your fast taper off lamotrigine.  How did you taper?

 

We generally recommend reducing by 10% per month, this is a harm reduction method which minimizes the risk of withdrawal symptoms.  Here is some information about stopping lamotrigine: 

 

http://survivingantidepressants.org/index.php?/topic/1122-tips-for-tapering-off-lamictal-lamotrigine/?hl=%2Btips+%2Bfor+%2Btapering+%2Boff+%2Blamotrigine

 

It sounds like you may be experiencing withdrawal due to tapering too fast.   As you wrote, it is possible to reinstate and start a slower taper.

 

Please carefully read through our reinstatement thread to help you decide if you would like to try this:

 

http://survivingantidepressants.org/index.php?/topic/3079-about-reinstating-and-stabilizing-to-stop-withdrawal-symptoms/

 

Its good that your symptoms are lessening, but no one can tell you when they will go completely, withdrawal symptoms from tapering too fast can last a long time for some people.

 

I don't have any personal experience with lamotrigine, perhaps others will offer more insight regarding this particular drug.

 

Petu.

[mammaP]

Hi Crimsonvoid, welcome to SA.  Petu has given you the info you need, I just wanted to say HI

and welcome. There is a lot of valuable info here that can help you through this process. 

If you consider reinstating it is best done as soon as possible in order to be successful. 

[Crimsonvoid]

So do you think there's a chance that I've caused permanent damage with this or do you think that the effects will eventually go away?

[Rhiannon]

CV, with the other psych meds that we have more experience with here, the withdrawal effects usually do go away eventually. For some people that's months, for others it's years. Nobody can tell you what's going to happen in your case.

 

Unfortunately I can't even make a good educated guess, because unlike with ADs or benzos I haven't seen hundreds of people go through lamotrigine withdrawal, so I don't have a good sense of how that plays out.

 

It sounds like you're doing pretty well right now with fairly tolerable symptoms and I think that's a good sign. Some people get horrible withdrawal from lamotrigine and it sounds like you're not one of those.

 

Nobody can tell you what the course of your own recovery is going to be from here out.

 

If we lived in a sane, just and honest society, scientific studies would have been performed and doctors and psychiatrists would be informed about withdrawal and we'd know what to expect. Unfortunately, when it comes to profits, we live in a society that is the opposite of honest and just, so those studies have never been done, and doctors and psychiatrists have only been taught what the pharmaceutical companies want them to believe.

 

If I were in your shoes I would probably do a small reinstatement of 10-20 mg and see if that improved my symptoms, then once I was feeling stable and well I would taper off of that last bit very slowly. However, it's up to you, and if your symptoms feel pretty tolerable and you're okay with them, you can try riding them out too.

 

I'd also recommend reading the book Anatomy of an Epidemic by Robert Whitaker.

[Altostrata]

Welcome, CrimsonVoid.

 

I agree with Rhi, you may wish to try a reinstatement of perhaps 10mg lamotrigine, stabilize, then go off very gradually from there.

 

Lamotrigine comes in 5mg tablets for children. Tapering at 10% per month can be accomplished with liquid compounded by a pharmacy.

 

Please read the links Petu gave you.

[Crimsonvoid]

I talked to my doctor and asked if I should reinstate and then taper off again, but he said that it would probably be best to continue without the medication. I’m just kind of stuck because, like I said my symptoms aren’t too bad but I am having trouble functioning on a day to day basis. I can struggle through it if it’s only going to last another few weeks or so, but since there’s no guarantee I’m kind of scared. I need to get a new job this summer, but there’s no way I could do that with how spacy I’ve been. And I just have no motivation. I have days where I feel perfectly fine and it feels like it’s over, but it’s too unpredictable.

 

It's really scary that my doctor and my pharmacist aren’t familiar with these withdrawal symptoms. But I'm glad that there's at least somewhere I can go to voice my situation. Thanks guys. =)

[bubble]

Hello CV,

 

I understand your concerns. From what I read in your last post, it seems that you have everything you need to make a decision. Which doesn't mean that it is easy. As we expected, doctors wouldn't know about withdrawal. And you are right, nobody can say how long the withdrawal will last and what form it will take because our drug histories and million of other things are different.

 

In my case withdrawal actually got worse as the time went by. The fact that I was waiting for them to go away ended in something very painful that it took months to very gradually recover from. I've also noticed that if people develop withdrawal symptoms early and if they are persistent and especially if they intensify gradually, reinstatement works best.

 

I have to say that I am, due to my experience, very much pro-reinstatement. Even a tiny amount of the drug can bring a huge relief and ultimately make us reach our goal of a drug free life faster. That's as much as I can help you with your decision making. If I were you, I'd do what Rhi and Alto suggested.

 

Regardless of what you decide, we will be here to help.  

 

best,

bubble

[Petunia]

If you decide that you do want to reinstate, and your doctor refuses to cooperate, find a new doctor or go to the ER.  Tell them you came off lamotrigine too fast, are having withdrawal symptoms and would like to go back on and taper slower.  As Alto mentioned in a previous post, you may find that a little as 10mg eliminates your current symptoms.

 

Do let us know what you decide.

[Altostrata]

Any doctor can prescribe lamotrigine for you, it doesn't have to be a psychiatrist.

 

It sounds like perhaps you need to be more assertive with your doctor. Speaking clearly and firmly, I would insist on a prescription for 10mg lamotrigine per day (2 5mg tablets per day).

 

You can start with 2.5mg (a half-tablet) and see if that works.

[Crimsonvoid]

I talked to a friend of mine that is a pharmacist and she is checking with a colleague that has had more experience with psychiatric meds, so I’m going to wait and see what she says. The part that really scares me is that it obviously changed something about my brain, but I have no idea what it changed or how. So I wonder if stopping so suddenly could cause damage that tapering off could prevent. Or if it would be worse to stay on it even at a low dose. On top of all that I’m not even sure what I should feel like, because I was on the med for so long that I don’t know what normal feels like. I’ve always had depression issues, so it doesn’t surprise me when I have bouts of depression, but I don’t know if it’s worse than it was. I wish I would have paid more attention before I started taking it.

[Altostrata]

Unfortunately, neither physicians nor pharmacists know much about psychiatric drug tapering and withdrawal syndromes.

[bubble]

I talked to a friend of mine that is a pharmacist and she is checking with a colleague that has had more experience with psychiatric meds, so I’m going to wait and see what she says. The part that really scares me is that it obviously changed something about my brain, but I have no idea what it changed or how. So I wonder if stopping so suddenly could cause damage that tapering off could prevent. Or if it would be worse to stay on it even at a low dose. On top of all that I’m not even sure what I should feel like, because I was on the med for so long that I don’t know what normal feels like. I’ve always had depression issues, so it doesn’t surprise me when I have bouts of depression, but I don’t know if it’s worse than it was. I wish I would have paid more attention before I started taking it.

 

hm, hm, hm

 

I have some good friends who are psychiatrists and pharmacists but when it comes to psychiatric medication I would always go with what our friend Alto here says because none of my friends spent around 9 years researching everything there is on these drugs and helping so many people come off safely. Not to mention having a personal experience which gives one a unique position to assess the theories.

 

I know it's strange to believe somebody on the internet but after I spent good 5 years trying to come off with the only result on ending on more, I sort of know what makes sense when I see it, be it on the internet or otherwise. But I guess we all have to do a certain amount of learning on our own skin.

 

I would definitely say from all our experiences stopping so suddenly definitely caused "damage" that tapering could have prevented. Tapering at 10 % every 30 days is called harm reduction approach because we see that there is less harm in staying longer on medication than stopping it abruptly. And although it sounds contradictory, this approach makes it possible for us to come off medication not only without these suffering but faster. If I had known about tapering and withdrawal 5 years ago when me and my doctor concluded there was no more reason for me to stay on medication, I firmly believe I would be off now. Instead, just out of the blue and to the shock of my doctor 3 months after stopping I was in the worst state ever, a lot worse than what I was when I started taking that medication. So I ended on more. Of course my drug and other history is very different than yours but certain principles work. 4 years on a drug is 4 years and your brain is definitely telling you it doesn't like the fact that it was taken away so abruptly.

 

When it comes to how long it will last, that's also open to guesses. But each of us thought we could tough it out. Again, my situation was very different but what I noticed on 2 attempts to stop taking medication following doctors orders (and actually going slower than the doctor said) was that my symptoms would get worse as the time went by. Once I lasted 3 months before I deteriorated into the worst depression ever. I'm not saying this to scare you. Maybe your symptoms will gradually get better , they usually do. But sometimes they get worse and it can take more than weeks. Actually we are usually talking about months rather than weeks that our CNS need to heal. 

 

I will look for a post by Rhi which answers your question of why that is so and what happened.

 

best,

bubble

[bubble]

To get an answer to your question: it obviously changed something about my brain, but I have no idea what it changed or how, you may want to check the last post here: http://survivingantidepressants.org/index.php?/topic/6447-best-of-sa/

 

It would also be useful to add your drug history in your signature so we can see it every time you post: http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

How are your symptoms now? The same, intensifying, changing?

[Crimsonvoid]

I'm definitely doing better than I was, but I feel like I've hit somewhat of a plateau. I’m having a lot of trouble concentrating and staying on task. My thoughts have always bounced around a lot, but in a different way, I guess. Is there anything that I should watch out for specifically that I should be worried about?

[Altostrata]

You may find you're hypersensitive to neurologically active drugs, supplements, and foods. Treat your nervous system very gently. It may takes months to heal.

[Crimsonvoid]

I think the inconsistency of it is the worst part. For example, today I feel almost 99%. But I worry that maybe I'm not actually feeling better, I'm just getting used to it.

[Rhiannon]

If you feel like what you're going through now is tolerable, that you could tolerate this for months even if you don't like it much, that's a good sign. 

 

I just wish I had more experience with people coming off lamotrigine. For me, it's absolute hell to taper, and I know it was hell for Gia too, but she knows other people who came off it fairly easily. So it's hard for me to predict.

 

That being the case I still think you'd be safest to reinstate a small amount, 5-10 mg, see if your symptoms improve, hold there for a few months, then taper off it slowly.

 

Regardless of what path you take please keep us posted. We learn from working with people, and as I say I don't have a ton of experience working with people coming off lamotrigine, so your story will be valuable to many people.

[Crimsonvoid]

I'm definitely doing a lot better. The haziness has cleared up almost completely, but I am still having some mood issues. The problem is that I don't know if that's the result of withdrawals or just depression issues that I have always dealt with that are resurfacing. So I am starting on bupropion to help with that. Needless to say I’m going to keep a real close eye on how I react to this med and I don't plan on being on it for ever if I can help it.

[bubble]

I'm very glad you are doing better.

 

I don't have personal experience with buproprion so had to google it to find it's also known as Wellbutrin, a drug that I see quite a few people here have problems tapering.

 

You might want to check info that we have on this drug here: http://survivingantidepressants.org/index.php?/topic/877-tips-for-tapering-off-wellbutrin-sr-xr-xl-buproprion/

[Altostrata]

One way or the other, you would do well to learn how to deal with mood issues without drugs. Are you seeing a therapist that is not pro-drug?